Motherhood, mental illness and beyond

Am I on your radar?

Trigger warning: suicide

Today the Samaritans announced the release of a new, bespoke app called Samaritans Radar. This will email people when someone they follow on Twitter is discussing depression, suicidal thoughts or similar key words. Their website states “Our App searches for specific words and phrases that may indicate someone is struggling to cope and alerts you via email if you are following that person on Twitter. Radar will then offer you guidance on what to do next.”.

I have no doubt that Radar is well-intentioned but it has caused a fair bit of upset in the mental health community. There are numerous reasons for this disquiet, not least that amongst several different press releases there isn’t one aimed at mental health service users (ie those of us who are actually mentally ill).

For me, there is a difference between someone encountering a distressed tweet and responding, and someone who is actively monitoring you for such tweets. The latter feels invasive and intrusive. It’s not dissimilar to the contrast between bumping into a friend in the high street, and following that friend down the high street so you can engineer an encounter. There is also a risk that this app could be used to target vulnerable individuals; I have at least one friend who is outspoken about her mental illness and receives all kinds of abuse as a result, even (sometimes especially) when she is in crisis. What a boon this app is for people like her abusers!

Another objection I have is that I, as the potential subject of this app, have no way of knowing who is monitoring me through it. In fact the Samaritans proudly trumpet that “The people you follow won’t know you’ve signed up to it” and having carefully read the press releases there seems to be no way I can stop people using the app to watch me. This makes me profoundly uncomfortable. Another disconcerting point from the press release is this:

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Why do the Samaritans feel the need to store a count of flags against my (as someone being spied on through their app) Twitter ID, what purpose does this serve and what will they do with such data? In addition, why do they want to store the identities of a Radar user’s friends? And why shouldn’t I know who’s using this app to monitor me so I can block them?

I know some would say that as all my tweets are in the public domain I have no grounds for concern; that people who follow me are watching me anyway. To a degree this is true. But when I tweet about feeling depressed, hypomanic, anxious or suicidal the last thing I want is to know that emails are immediately being sent to anyone who wishes it. The support and kindness I’ve received from Twitter users is lovely but it’s by chance when someone has seen something I’ve said, not because someone is targeting me to see when I’m in distress.

I’ve already seen several people say that they now feel unable to be open on Twitter as a result of this app’s launch and I have sympathy for that stance. It’s going to be like having someone watching over your shoulder all the time. It makes vulnerable people feel more vulnerable and more likely to suffer in silence instead of opening up. If there was a way to prevent your followers from watching your account with this app then I think my objections would largely disappear. But as it stands all the Samaritans have done is make me feel less safe, not more. Please, if you follow me or anyone else with mental illnesses on Twitter, do not utilise Samaritans Radar without asking permission.

You probably don’t even remember me, but you were the reason I cried myself to sleep that night. You probably can’t even remember what I look like, but I remember how you made us feel. I felt so embarrassed and humiliated that I wanted the ground to open up and swallow me. I’m a grown woman, but I wanted to hide myself in a corner and cry. I hope your little moment of amusement was worth it.

We’d had a lovely evening, until we happened upon you. We laughed and chatted with the waiter between courses as we enjoyed a relaxed, romantic meal together on the first evening of our holiday. We held hands and gazed into one another’s eyes as we relished the time alone together; time to relax away from work, and home, and family, and all of the pressures of modern life. We smiled at one another when the waiter addressed us as “ladies”, having the courtesy to correctly gender my partner despite it being obvious she’s in the early stages of transition from male to female.

Transgender. That’s what my partner is. She’s someone who, having been assigned male at birth, spent many years of her life struggling with the feeling that she was being forced to live in a gender she wasn’t comfortable in. Someone who, after having been forced to conform to society’s expectations of how a boy – and then a man – should think, feel and behave, found the courage to be true to herself. It’s nothing to do with her sexual preference, a traumatic childhood or some kinky fetish, it’s who she is.

Stop and think for a moment, you two gentlemen who laughed at us as we were minding our own business. Stop and think how comfortable you would feel stepping out of your front door in a dress, make up and heels. Imagine how it feels to feel that you have no choice but to put yourself out there, in public, with a man’s face and body dressed in women’s clothing. Contemplate how awkward, lonely and potentially dangerous every single mundane task becomes when you have to expose you innermost self in such a public manner, and when you have to dare to be different.  Can you even begin to imagine how crushing it must feel, having tried so hard to look passable and found the courage to face complete strangers dressed in a way that makes you feel both vulnerable and conspicuous, to be laughed at in public by fellow adults? I say “adults”, but really you two were like children in a schoolyard. Children who pick on a child for having the ‘wrong’ trainers, or whose physical abilities are different from yours, or who doesn’t generally conform to your expectations of how other people should be. Please think about what you did: You reduced a grown woman (me) to tears, you tainted our whole evening with your cruelty and you knocked the confidence of two people who’ve spent a very long time trying to develop what little confidence they have. I hope your little joke was worth it.

Perhaps you’ll feel less ashamed or even vindicated when you hear that you weren’t the only people to treat us so badly. Perhaps you’d try to justify your behaviour if you knew that are others out there with similar prejudices, and a similar lack of respect for feelings of others.  Your contemptible behaviour was amateur compared to what we experienced the following evening, when a family of six fellow diners in a restaurant not only mocked us, but took and shared photos for one another to laugh at. Good work, people. This is the monster that a culture of laughing at people who are different creates.

The strength and courage my partner shows on a daily basis amazes me. She faces the same fears, the same prejudices and the same humiliation every day. Every. Single. Day. And yet with each new day, she puts on a brave (and beautifully made-up – I like to take the credit for her excellent make up skills) face and does it all over again. Why does she do it? Because after forty years of feeling forced to pretend to be someone she’s not, she’s finally free to relax and be herself in a way you and I probably take for granted.

She’s brave, my beautiful girl. She’s brave, and funny, and wise, and kind. She shows a generosity of spirit that you so clearly lack; a tolerance and respect for others that you would do well to learn from. She’s not asking for your approval or for your support. She’s simply asking for the respect we all owe to one another; she’s asking to be left to go about her life without being humiliated in public and treated like a freak show. She might, in your eyes, be a man in women’s clothes. She might be different to anyone else you know, and she might have made choices in her life that you cannot even begin to understand. She might be all of those things, but she’s not a coward or a bully, and so I’d rather be her than you any day of the week.

Signed,

Me

This week the Sun, that proudly misogynistic excuse for a newspaper, launched a campaign called No More Skinny. Fronted by 3 supposedly famous men (I haven’t heard of any of them but then I’m not really the Sun’s target demographic) it claims to be demanding that model agencies and fashion shows stop using models who are “stick-thin”. Now, the idea of campaigning to stop the promotion of generally unattainable thinness & the normalisation of disordered eating is one I could definitely get behind. But I’d that’s the case, why not call it “No more skeletal models” or similar? Well, because No More Skinny is all about men’s perceptions of women’s bodies . I shouldn’t be surprised, really, seeing as this comes from the “newspaper” that considers soft pornography suitable for a supposedly family-friendly title. The intentions of the campaign’s apparent founder, Dan Wootton, may have been good (he writes in this article that as a gay man who struggles with his weight, his concerns are genuine) but the result is not.

Mr Wootton’s co-campaigners are Olly Murs and Professor Green, and their attention seems focused on the attractiveness of the women concerned. “Sometimes skinny women can look attractive – but it is too dangerous. It is ridiculous when you see size-six, even size-four, girls on stage” worries Mr Murs. Professor Green (real name Stephen Manderson) chirps helpfully that “The most important things are health and happiness” and frets about women (he calls them girls but I assume he means women) who crash diet and have unnecessary cosmetic surgery. At some point Marilyn Monroe is cited as a desirable body shape.

And this is why the No More Skinny campaign is so useless. It’s not about discouraging the use of skeletal models, it’s not about encouraging girls and women to be body confident whatever their shape, it’s not even about the dangers of restricted eating and excessive dieting. It’s about what men find desirable. Let’s ignore the fact that female bodies come in a variety of shapes and sizes – some naturally thin, some naturally podgy, most somewhere in between. Let’s ignore the objectification and othering of women that the Sun encourages on a daily basis. Let’s instead focus on what men find desirable in a female body and campaign for that.

For years women have been given conflicting messages about what men find attractive. There are two main points I wish to make about this. Firstly, men find a variety of body shapes attractive, they’re not a legion of robots programmed to admire only one type of figure. Secondly, and far more importantly, women and girls are far more than merely a lump of flesh for men to judge as aesthetically pleasing. Women run, walk, rest, have sex, dance, bear children, climb, work and many other things – and at no point is the superficial appearance of our bodies relevant, only their function.

Body confidence is just that, having confidence in your body. It doesn’t necessarily mean loving every inch of it nor ceaselessly working to maintain it. But it does mean finding the strength to ignore what society says is desirable and focusing on what works best for you. Ignore No More Skinny, ignore “real women have curves” (which always makes me wonder if non-curvy women are imaginary or maybe holograms) and use the body you have. Tall, short, fat, thin, hourglass, apple, pear, taut, wobbly, buxom, athletic, whatever your body looks like the only person whose opinion about it matters is you.

My pain

Today I am angry, I am heartbroken and I am self-pitying. Why? Because after almost a year of bearable pain, the last couple of days have seen me once again reduced to sitting or lying very carefully, walking very slowly while leaning heavily on my stick and trying not to sneeze, cough, laugh or do anything else that will send lightning bolts of pain through my body.

The reason for this sudden degeneration is very simple; on Saturday I bathed the children. That’s it. Usually DH does bathtime because I struggle to but on Saturday I decided that for once I was going to have the fun of doing it. And now I’m paying for it.

This makes me so, so angry. After 18 years of gradually increasing back pain you’d think I’d be resigned to this but no. I want to play with my children properly, getting down on the floor to build farms and railway tracks and roll around with them. I want to be able to sweep them up into my arms without having to steel myself against the pain, I want to run around with them playing football and chase, I want to take them for rambles across the countryside. I want to do normal mum things, I want to live my life without the constantly nagging companion that is pain.

It’s not fair. I know I sound childish and petulant but I don’t care. I don’t want this any more. I have spent more than half my life in constant pain; I had been in pain for 8 years before I had my first MRI scan, it was another 9 before I had a proper diagnosis. I’ve tried osteopathy, acupuncture, all kinds of physiotherapy, pain management clinics, cranio-sacral therapy, experimental therapies, you name it I’ve tried it. Painkillers are either ineffectual or so strong that they make me vomit constantly. My husband and children have never seen me without the spectre of pain and I doubt they ever will.

I know that I am far more fortunate than many, that have much to be thankful for and I am, believe me. But right now none of that matters because I am in pain, emotional as well as the gut-wrenchingly physical. This pain has been wearing me down a little more every day for 18 years and I don’t want it any more.  I don’t want my husband to have to help me dress and get to the bathroom on days where I can barely move, I don’t want my children to have to be careful around me in case they hurt me. I don’t want it and right now I am so furious that I could just scream all this pain and heartache at the universe. Instead I’m typing these words through angry, frustrated tears because I know that there’s nothing I can do to change this. There are no practical treatment options at this time.

And I can’t even have a proper tantrum about it because stamping my foot would hurt too much.

It’s been a while…

(For the background to this post please read Consequences).

Well, after a month or so without blogging or feeling comfortable talking openly about my mental health on Twitter, I’ve had enough. I refuse to hide any more. The woman who reported us has contacted me in order to confess; it seems that she genuinely (however misguidedly) believed that the children truly were at risk. Thankfully Children’s Services have made it very clear that they have absolutely no concerns and have indicated that they will treat any future complaints from this woman with caution.

So after having a break in order to think things through, I’m back. Through the unwavering support of pretty much everyone I know, whether online or off, it has gradually become clear to me that the importance of speaking out against the stigma of mental illness far outweighs the risk of another misguided report to the NSPCC. That this happened at all (despite the fact that I am stable, that DH and I are both in regular contact with healthcare professionals and that we have family close by who both help and support us) merely shows just how far we still have to go before mental illness is treated the same way as physical illness.

Of course, the irony of all this hasn’t escaped me. My writing about mental illness and its stigma has led to DH and me being accused of being unfit parents because of the stigma surrounding mental illness. It’s almost funny. Almost.

Consequences

Recently I wrote about being reported to the NSPCC and consequently Children’s Services in these two posts: The Letter and The Letter – part 2. If you don’t have time to read them, the short version is that the NSPCC received 2 anonymous reports from someone who was concerned that my and DH’s mental illnesses meant that our children were at risk. Children’s Services investigated and quickly concluded that the reports were groundless. That, I hope, is the end of the matter.

Except that it isn’t, not really. Although I choose to believe that the reports were made due to genuine (albeit misguided) concern rather than malice, knowing that someone has read my blog and my tweets and concluded that I am an unfit mother, DH an unfit father, has been profoundly distressing. For me it has caused heightened anxiety and stress-induced insomnia, DH is struggling with an abrupt plunge into low mood. I hope that in time these will pass, and of course the children are still entirely unaware of the whole situation and its effects, and will hopefully remain that way.

I have always prided myself on being open and honest about my mental health, both here and on Twitter. Stigma is increased by ignorance, and by speaking out I hoped that in a small way I could help reduce that stigma and the alienation that many people with mental illnesses suffer. But to have that honesty turned against me and wielded as a weapon has been a horrifying experience. I’ve never hidden the fact that I find blogging to be an extremely therapeutic way of dealing with my illnesses, both mental and physical. I have also found a wonderful support network on Twitter, where I can be honest and speak of my experiences to those who understand and empathise as well as to those who really have no understanding of what mental illness can be like. In return I’ve been able to offer sympathy, advice and comfort to others who struggle with their mental health. But I’m not sure that I can continue to do so.

Despite our swift and complete exoneration by Children’s Services, this experience has left its mark. I no longer feel safe blogging and tweeting honestly about how I am, how my day is going, how DH is. Even as I write this post I’m wondering whether it will be turned into a stick to beat me with, whether it will prompt yet another report to the NSPCC. I have lost my sense of safety, of refuge, and of course that means that I have lost my online support network. This is no trivial thing; in the past the support I’ve received from individuals online have literally made the difference between life and death. But now that’s gone. I feel watched, I feel harassed and I feel as though my honesty has endangered the happiness and wellbeing of my family.

I don’t know whether these feelings will fade as time passes but I certainly hope so. I will miss the catharsis that blogging can provide and I will miss being able to interact with the mental health community in a meaningful way. It’s been very important to me that I speak out about mental health issues and I hope that I will be able to again, but for now my voice has been silenced.

The letter – part 2

A week ago I wrote this post after discovering that DH and I had been reported to Children’s Services. I am pleased to say that today I have spoken to Children’s Services again and, despite a second complaint from the same individual after they read last week’s post, they will not be investigating further. In fact, having spoken to the healthcare professionals who regularly see DH and I, Children’s Services are confident that our children are at no risk whatsoever. Of course I’m sad that the NSPCC and Children’s Services had to waste their precious time investigating groundless complaints but in a way I think it’s a good thing; it’s far better to check out every report than for children who really are at risk to be overlooked. Social workers have a seemingly neverending and often thankless task but their work is invaluable.

The main cause of the calls to the NSPCC seem to be (and I’m quoting from what the social workers have told me) that DH and I have mental illnesses, that I am open about my mental illness, that our children have poor nutrition and most recently that we have “so many bad days” that we are “on the dole”. Now, our children are obviously well-fed and being on benefits is no crime, despite being embarrassing or shaming to admit to at times. Equally, having a mental illness isn’t a crime but there is a lot of stigma and many people don’t really know anything about it. That’s partly what prompted me to start blogging, because I was tired of hiding my mental illness when I didn’t feel it was necessary to hide my physical illness.

I will admit that this incident has made me wonder whether I should continue blogging and tweeting so honestly, or whether I should stop. After careful consideration and discussions with numerous people I’ve decided to carry on as normal. If nothing else this whole sorry episode has demonstrated just how much ignorance there is about mental illness, and if I can help people to be better informed then that can only be a good thing.

To the person who reported us I would like to say this:

I’m sure that you’re happy to hear that my children are well-cared for and not at risk. It’s a shame that you felt unable to approach DH and I before speaking to the NSPCC; we’re nice people and can take criticism, especially if it comes from a place of genuine concern.

If you would like to learn more about mental illness you can access some great information at Time To Talk and Mind, while the Mental Health Foundation has a good explanation of stigma here.

I hope your mind is now at ease as far as my children are concerned. Yours,

Sam.

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